December 2014
Newsletter

Friends, best wishes for a very happy new year!

The new year is here – it is time to look back at 2014 and to say a few words of thanks.

It has been a great year – a year that certainly holds promise for reduced burden of disease-related suffering in our country. At the national level in India, the NDPS Act has been amended, though the state rules are yet to be announced. The National Program in Palliative Care is slowly making progress. Many people stood with us in this difficult journey, and no words are enough to express our gratitude.

In 2014, Pallium India organized a task force to create curricula for MBBS and Nursing undergraduate education and also for training of doctors, so that they can qualify to man Recognized Medical Institutions for stocking and dispensing opioids. Palliative care enthusiasts from different parts of the country and abroad came together to make this happen. To them also, our heartfelt gratitude.

There have been many more exciting events which made us feel that our efforts are closer to bearing fruit, though the path forward is long and hard. For everyone who supported the work, for everyone who helped to lay this foundation on which we have to build our future work, for everyone who continues to stand by us, Thank You very much! We look forward to more positive developments in 2015 in our efforts to bring palliative care to every suffering person in our world.

Happy New Year!

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Palliative care for children: get-together for children and families

The third anniversary celebration and family get-together of Pratheeksha Palliative Care Clinic for Children, Thiruvananthapuram was organized on 20 December 2014 by Pallium India and SAT Paediatric Department & Paediatric Neurology. The event was inaugurated by Shri V. N. Jithendran IAS, Director, Social Justice Department, at Satyan Memorial Hall, Thiruvananthapuram. The poet, Prof V. Madhusudanan Nair delivered the keynote address.

The program was attended by the children that we care for, their families, as well as by well-wishers.

Mr Dinesh Panicker, film personality and a long term supporter of Pallium India, talked to the children in a way that could really appeal to them. Professor Madhusudanan Nair, the poet, sang for them and the children joined him in a chorus. Dr P G Hariprasad, the chief activist from the Government S.A.T Hospital, also spoke on the occasion.

Cultural programs were performed by children under our care and by volunteer students from Mar Baselios College of Engineering and Technology. The children and their families visited the museum in the afternoon along with the organizers of the event.

People receiving care from the palliative care unit at Pain and Palliative Care Society, which functions in Pushpagiri Medical College Hospital, Thiruvalla, in Kerala, were the stars, during the 12th annual day meeting of Pain and Palliative Care Society.

Smt. Valsala is a young woman who has been living with cancer in her bones, which have spread to “practically everywhere”, according to her doctor. The secondaries in her brain have made her almost completely blind. Yet, she walked up the dais unaided and rendered a beautiful song praising God, touching everyone’s heart.

A young man, who developed paraplegia following a fall from a height, sat and smiled. “I am happy now,” he said.

“I don’t worry about my body any more,” declared another young man on a wheelchair. “I know they will look after it.” He had become paraplegic following a fall from a construction site in a Gulf country. He continues to work as an electrician.

The shy, young amputee who sat next to him did not speak up, but her mother did. “One thing the girl insists on,” said the mother, “is that she gets a periodic call, enquiring after her welfare, from the palliative care worker, Rev. A. C. Kurian.”

It was Dr P. T. Thampi’s initiative which started the palliative care unit twelve years back, thus making that institution one of the few in our country which provide pain relief.

As often happens in palliative care meetings, the hall overflowed. There was not even standing room in the back. Congratulations, Dr Thampi and all his colleagues and friends in Thiruvalla, on your achievements.

When we built our house in 1967, we did not know about the need for wheelchair-friendly houses. It was in 1989, when my husband’s wheelchair could not be taken into the bathroom that we realised the houses we build today are inconsiderate of the needs of the aged and the differently-abled. My friend, who is in a wheelchair, had to make changes to his house so that he can move about with ease. Another friend, who is also in a wheelchair, wishes to go to a resort with his wife. Is it possible at all?

Let us have a country that is barrier-free, so that wheelchair-bound people can get into buses, visit museums, shopping malls, parks and resorts – all on their own.

The newsletter had also carried an article titled “Seeing the Invisible Patient“, on how the care-givers of patients are ignored by everyone. Dr Sara Varghese shares her own experience:

No one usually bothers about the carer. Before my husband passed away, I was his carer for two years. Apart from two instances when Dr Rajagopal of Pallium India and the late Dr Pulimood, who was the Director of CMC Vellore, asked me about my health and my sleep, no one else ever enquired about me.

Thank you, Dr Sara Varghese, for sharing your thoughts with us.

The Chief Minister of Kerala, Shri Oommen Chandy, presented the Dr MIMS Awards for excellence in healthcare on December 28, 2014 at MIMS Auditorium, Calicut. Dr M. R. Rajagopal, Chairman of Pallium India, received the Best Doctor award. Prof Sunil Muthedath was the recipient of the award for Best Health Education Initiative through Media. Dr Zulfikar Ali and Dr Manu Ayyan from Pariyaram Medical College received the award for Best Innovation and research in Healthcare for creating a low cost device for endotracheal intubation in emergency situations.

Dr Rajagopal has been nominated by CNN-IBN for the “Indian of the Year” Award under the Public Service Category. To vote for Dr Rajagopal as your ‘Indian of the Year’, please post ‘I vote for #iotyRajagopal as CNN-IBN Indian of the year 2014’ on your Facebook Timeline. (You can also visit www.facebook.com/indianoftheyear and click on “IOTY 2014 Nominees” to cast your vote.).

We thank Dr Vijayanand Palanisamy from Hyderabad for bringing our attention to the findings published in Journal of American Medical Association of December 8, 2014 by Fournier. J et al., showing that Tramadol could cause hypoglycemia. Though rare, this certainly gives cause for concern, especially when Tramadol is used in diabetics.

The whole of palliative care community of India feels that the ban of inexpensive analgesic Dextropropoxyphene is unreasonable. We also suspect that it is the onslaught of the industry which wants to promote more expensive medicines, which creates evidence against inexpensive drugs.

Following our representations, a technical committee of the Department of Health in April 2013 recommended that the ban be withdrawn conditionally. A year and a half later, the ban continues to remain in force. The result: people are forced to use the several-times-more-expensive alternatives.

While action is delayed, poor families starve because all available resources go towards the purchase of the fearfully expensive painkiller, now the only one available to most people in a country where less than 1% of the needy have access to morphine.

We understand from the Ministry of Health that officials are concerned with the stories of abuse of the drug, especially in North-Eastern states. The Ministry asked for our arguments against this fear. Tramadol is as prone to misuse as Dextropropoxyphene.

Those of you who would like to do something against this unjust ban, please write with your arguments to:

Secretary of Health, Ministry of Health and Family Welfare, Nirman Bhavan, C-Wing, New Delhi- 110001.

There is a resurgence of activity in palliative care at Indore Cancer Foundation in the state of Madhya Pradesh, a state which even today has very little palliative care. A team from Pallium India spent two days with the local team, doing a workshop which, to a considerable extent, included practical training. In the picture, you see our nursing consultant, Mr Jayakrishnan, working with the local team to treat lymphedema.

Best Wishes Dr Digpal Dharkar, Mrs Yashoda Dharkar, Dr Suresh Verma and all other members of the team.

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Scholarships are now available!

Are you a practising doctor or nurse, interested in learning fundamentals of Palliative Care to improve or start new services for patients with advanced diseases?

Telephone: +91-9746745497 or E-mail: info@palliumindia.org

Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

During the annual World Cancer Congress held at Melbourne, Australia, with which was combined the annual meeting of Clinical Oncology Society of Australia (COSA), one session was devoted to development of cancer services in developing countries.

Dr Odette Spruyt, a long term friend of Indian palliative care, described the Hamrahi program, which is taken up by Australia Palliative Link International (APLI) in collaboration with Pallium India. In the program, a doctor-nurse team builds a long-term relationship with one palliative care centre in India. Most of such Indian centres are manned by doctors and nurses with not more than six weeks of training and who have very little scope for updating knowledge. The Hamrahi team of doctor and nurse from Australia or New Zealand spends at least one week with the same team every year, for a minimum of three years. Usually, this helps in building long-term relationships and in improvement of services.

Pallium India also participated in the session, discussing trans-cultural issues. More discussions with happen during the course of the Congress, regarding further development of Hamrahi to cause even more significant impact.

It is hard for any one of us to watch children suffering. Often, we fail to take note of the positive energy that children with disease exude. They can teach us a lot. If you doubt this, wait till you see the upcoming movie Little Stars.

Pallium India had the privilege to be part of the launch of the next step of Little Stars during the world cancer congress at Melbourne, Australia. It is a movie being produced by Mike Hill and Sue Hill, the producers of Life Before Death.

Let us hope the Little Stars will bring us one step closer to taking care of the twenty million children around the world who would benefit from palliative care.

Thank you, Mike Hill and Sue Hill, for what you are doing for advocacy on behalf of children.

It was a huge privilege for Pallium India to attend the fourth and final BBC lecture by Dr Atul Gawande in New Delhi. True to form, Dr Atul Gawande discussed contemporary medical issues related to end of life care with reference to the experience with his own family. He particularly emphasized the lack of access to pain relief and palliative care in India and call for an improvement in the situation.

Atul Gawande’s latest book, Being Mortal, is listed among the “Ten Must-Read Books” by several newspapers and websites. We feel it must also be made compulsory reading for any palliative care person – in fact, for anyone associated with medical or allied healthcare.

In Being Mortal, one of the points that Dr Atul Gawande deals with is the clear distinction between nursing homes and assisted living centres which, in the event of the elderly becoming too frail, take over the person’s life. In a typical nursing home, what the person desires or what he wishes to do becomes irrelevant in the hurry to get some order and regimentation. A change in the order of things came with a Stanford Professor named Carstensen, who took the trouble to research into what people want and need, and developed the concept of assisted living. In an assisted living home, the person has independence in one’s own unit, which would include a kitchen. They have the right to lock the door, if they want to. Or they have the freedom to walk if that’s what they desire, even at the risk of incurring a fall and a fracture. The positive difference it makes to the elderly has been proved to be phenomenal. We need to remember this when, in our anxiety to control symptoms, we expect people to get admitted to hospitals or palliative care inpatient units, especially for end of life care.

And when such an admission becomes absolutely unavoidable, we must remember to make that place of stay as like home as possible, and to permit as much independence to the person as feasible.

Pallium India and All India Senior Citizens Confederation and Senior Citizens Service Council partnered to conduct a two-day national workshop on palliative care for the elderly on December 19 and 20 at Trivandrum.

Under the leadership of Mr Anil Kaskhedikar, the President, and Mr Haneefa Rawther, the local organizer, the workshop went very well indeed and opens up possibilities for much collaborative work in the future.

Nursing Excellence Award offered by Thanal Charitable Organization, Lakshadweep, honors outstanding performance in palliative nursing. This year’s Nursing Excellence Award was presented to Smt Crescentia T. T. by Shri B. Ramakantha, Honorable District Judge. Smt Crescentia has worked with Thanal for the last 16 years, with 3 years service in palliative care. This award consists of cash, shield and certificate.

During the presentation of the award, Shri B. Ramakantha said, “The service of mankind is the path to salvation and to God”. In his address, Shri. Achada Ahmed Haji called palliative care a very noble service. Dr K. Shamsudheen, District Health Officer, narrated his experiences during home visits. Janab AP Mohammed Koya, enchanted the audience with his own life story. He said that he could earn more happiness with palliative care team than with medications. Mr.Moulana, Chairman of Thanal, shared his dream of expanding the services to all other islands. Dr.Ali Azher, Palliative Care Doctor, and Mr.Ahammed Khafi, Clinical Nurse Specialist, also spoke on the occasion. Delegates from Australiasian Palliative Link International (APLI), Dr.Sophie, Dr.Joshua, Dr.Jonathan and Mrs.Sara appreciated all the good deeds done by Thanal.

Lakshadweep Institute of Palliative Medicine, an organ of Thanal, had been approved as Recognized Medical Institution for possession and supply of oral morphine by the Kerala Government.

Pallium India is very proud of this gem of an associate centre in Lakshadweep.

International Palliative Care Literature has frequently referred to the dearth of palliative care services in the Gulf territory. Authors have wondered why, in the midst of so much of affluence, this humanitarian element of healthcare has been lost.

Well, things appear to be changing. Following last year’s initiatives, under the auspices of the Department of Oncology at Royal Hospital, Oman, in partnership with the Ministry, a six-hour palliative care workshop was organized. The audience included predominantly nurses, but had more than twenty-five doctors from various specialities. The interest in palliative care was palpable. We congratulate Dr Zahed, the palliative care enthusiast, and Dr Rajan, the Head of Oncology, for allowing Pallium India to conduct the workshop.

The 22nd International conference of Indian Association of Palliative Care (IAPCON HYD 2015) being held at the Hyderabad International Convention Centre, Hitex, from 13- 15th February 2015, will provide an opportunity to share creative and innovative developments in clinical practice, delivery of service, education, research, policy and much more. The conference is being jointly organized by the MNJ Institute of Oncology & Regional Cancer Centre, Hyderabad, and Pain Relief and Palliative Care Society, Hyderabad.

The International Association for Hospice and Palliative Care (IAHPC) will provide ten (10) scholarships to support the travel of palliative care workers to attend the 14th World Congress of the European Association for Palliative Care (EAPC Onlus) in Copenhagen, May 8-10, 2015.

The applicants must be current IAHPC members, currently living in a developing country and actively working in palliative care.

Dr Odette Spruyt, a member of our association, is conducting a qualitative study exploring the views of doctors working in Australia and India, about suffering. This study has ethics approval from Peter MacCallum Cancer Centre, Melbourne, Australia, and Lancaster University, UK. It is being conducted as a PhD palliative care project, under supervision from Lancaster University Faculty of Health and Medicine, Division of Health Research.

Doctors working substantially in palliative care are invited to consider participating in this project. For more information about the study and how to participate, please refer to this flyer.

If you are interested, please complete the Expression of Interest form at the end of the flyer and scan/email to Dr Odette Spruyt at odette.spruyt@petermac.org.

Thank you, everyone who already responded. For those who have not done so, will you please do at the earliest? Thank you very much for cooperating in this.

Pallium India apologizes for the inconvenience caused to anyone who was planning to attend our six weeks certificate courses in February 2015. Due to unavoidable demands on the faculty’s time and clashes of schedules, we have been forced to cancel the courses in February 2015.

“In India, palliative care activists are celebrating the unprecedented changes in policies recently initiated by the Government of India. So what’s to celebrate and what led to policy changes?” Dr Nandini Vallath and Dr M. R. Rajagopal explain in this featured article in the IAHPC newsletter about the recent progress in India in the field of palliative care and the way forward.

“The low cost, better hospitality and up to the mark palliative care were the factors that will make India a global leader in health tourism,” says Hakan Tarakcioglu, international head of Turkey-based Kent hospital. (Read the complete news: Centre Gears up to Regulate Medical Tourism)

Did you notice – palliative care – that’s the catch! Let us make note of the fact that at the Medical Tourism Congress, it had to be a voice from abroad that had to mention palliative care. Isn’t it rather clear that the need for palliative care is not felt by the healthcare industry at large, in India?

Please look at Dr Esther Munyoro’s message in Pallium India’s Newsletter (October 2013, Parting Shot). Dr Esther came to India for her aunt’s treatment and she says, “Even in a country with such advanced medical care, patients do not have physical pain adequately addressed.” She asks, “In a country that has a robust medical healthcare system with evidence-based practice why is pain not adequately dealt with?”

Every spring for the past three years, I have posed a question to the small group of first-year medical students who signed up for my Health and Human Rights course: “Who here has heard of the Universal Declaration of Human Rights?”

It’s an elective course, so the students are motivated. Of the 10 or 15 present, about three raise their hands. Then I ask the awkward follow-up: “Who has actually read it?” That is when all of the hands go down.

PARTING SHOT

If it is beneath you to fetch a pitcher of ice water for a thirsty patient, so is the practice of medicine.
– Mark Reid, M.D.

This quote reminds us of a story told by Dr Richard Lamerton, who was Dr Cicely Saunders’ first assistant and the World’s second palliative care physician, in his book, East End Doctor. Richard was called to see a patient in the middle of the night. He arrived to find that the patient had vomited all over the living room floor. She was now apparently all right, and resting comfortably. There was little medical attention that was needed at that time. Richard got a bucket and a mop and cleaned up the living room floor, and left.

Maybe, Mark Reid and Richard Lamerton teach a lesson to every one of us who ask, “Is that the duty of a doctor?” or “Is that the duty of a social worker?” They remind us that more than a doctor or a nurse or a social worker, each one of us is a human being and, if we are unable to do what is most needed at that time, we are failing, both as human beings and professionals.

This train of thought leads us to congratulate nurses in palliative care to whom this sort of thing seems to come so naturally. Like the time when our nurse Jaya and colleagues found an elderly person in a home, very unclean and with ants crawling over the foot. The wife, partially blind, was staggering around, doing essential chores. Jaya and colleagues left their nursing and medicine kits, fetched some water and towels, and cleaned up the man and the bed, before they left.

Jaya and all nurses in palliative care, with Max Reid and Richard Lamerton, you also teach us the value and dignity of our profession and the true meaning of health care.

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